If you’ve read any of the content of this blog, then you know that I started it when my daughter was diagnosed with childhood-onset bipolar disorder in 2011. A few months later she was diagnosed with childhood-onset schizophrenia. A few months later, she was diagnosed with schizoaffective disorder-bipolar type. It was quite a time for an 11 year-old girl.

We saw so many specialists during that time that I am still paying off the medical bills, and we had health insurance! That was five years ago! Suffice it to say, those years are a blur. Some kind of lucid nightmare. So, what news do I have?

Ever heard of a mast cell?

If you have not and you yourself or someone you care about has a biologically-based brain disorder, then heads up.

A mast cell is a type of white blood cell produced in our bone marrow. More specifically, it is a type of granulocyte. A granulocyte is a cell (-cyte means ‘cell’) that contains ‘granules’ which the cell will eject into nearby tissue or the bloodstream once ‘activated’ or signaled to do so. The granules are like a chemical cocktail in that these granules are chemically varied. In other words, there are a lot of different chemicals inside a mast cell, and when the mast cell activates it dumps its chemical payload wherever it is in the body.

The granules consist of familiar sounding chemical mediators like histamine, heparin (anticoagulant), and serotonin. Some of the chemical mediators within the mast cell may not sound so familiar like prostaglandins and cytokines, for example. Mast cells are heavily involved with allergic reactions, hives and flushing, asthma, and anaphylaxis. They are also involved with modulating the blood-brain barrier (BBB). Recent research has shown that mast cells are involved in a lot of other bodily activities, too, which is why they can be such troublemakers.

A mast cell with visible granules

What does this little white blood cell have to do with, well, anything pertaining to you?

About ten years ago, a disorder called Mast Cell Activation Disorder (MCAD) was “discovered” on the heels of another rather rare neoplastic disorder called mastocytosis (there’s that word root again –cyte). A mastocyte is a mast cell. The suffix -osis means “condition”, but it often describes an increase in number or a proliferation. So, mastocytosis is a condition in which mast cells proliferate and in which there is an abnormal condition of the mast cells themselves. They do not behave like they should. It was also determined that there should be a spectrum of mast cell disorders, and MCAD and mastocytosis should be on that spectrum–mastocytosis being on the severe end of that spectrum; MCAD being somewhere in the middle. Anaphylaxis Syndrome, another manifestation of a mast cell disorder, is also on this spectrum.

What does this spectrum have to do with mental health?

It has been determined by specialists studying mast cell disorders that neuropsychiatric disorders can be a manifestation of activated mast cells. Wha….?

Here’s some anecdotal evidence. I recently visited my friendly, local allergist who just returned to my city from practicing at the Mayo Clinic. I have a long history of weird health issues. Weird health issues. Also? Over the years, I have acquired a long-ass list of allergies which almost always result in anaphylaxis. I almost die a few times a year. I grew tired of almost dying so frequently and made an appointment with an allergist in the know. After Dr. Allergy reviewed my history and case, she said, “I think you have a mast cell disorder.” Off to the local mega-versity for fancy tests! When I saw her for my follow-up, she declared that I was on the mast cell disorder spectrum. Okaaaaay…now what?

Lots and lots of antihistamines every day to manage the unruly mast cells. Multiple Epipens placed everywhere in my house and on my person at all times. Benadryl as well. Low-histamine diet. Anaphylaxis action plan in the house, with family and friends, and with me for trips to the ER as well as blood and urine panel orders for the ER every time I show up there with an allergic reaction. What a pain in the…

Here is what I noticed from the high antihistamine doses:

my chronic migraines suddenly got better

migraines were treatable with a single dose of triptan and antihistamine (second-generation)

GI issues improved dramatically

body pains improved

anxiety issues improved dramatically

Note: high doses of Benadryl lowers seizure threshold.

Here comes the really interesting part.

Before Grace became symptomatic or entered the prodrome, she was hit hard with a mycoplasma infection. Mycoplasma is a class of a bacteria that lack a cell wall making them more amoeba-like and invulnerable to most classes of antibiotics because many antibiotics work by breaking down the cell walls. In the case of a mycoplasma infection, the antibiotics paralyze the bacteria to prevent further multiplication so that your immune system can kill it. This can take weeks to months depending upon which variety of mycoplasma you’ve got (there are over 200 types), and symptoms can recur years after infection. Sort of like a bad knee aching before it rains. Well, aside from mycoplasma making you really sick, what else do they do? This:

Eosinophilia is an increase in eosinophils which is another granulocyte associated with allergic reactions, parasites, inflammation, and cancer. In very simple terms, eosinophilia, a high eosinophil count in the bloodstream, would be, for example, common to see during ragweed season if you are allergic to ragweed. Your eosinophil count would be elevated due to the presence of an allergen. What does eosinophilia have to do with anything? Mast cells influence eosinophils and vice-versa. When Grace was released from her first hospital setting, she had eosinophilia. The pediatrician on duty spoke to me about it. She didn’t know what to make of it but told me it was noteworthy. I should look into it. I told our pediatrician. No one knew what to do about it at the time. Then. But, now? I wondered in light of what I am learning about mastocytosis.

So, what did I do? I experimented.

Grace gets terrible migraines–even now. It was a hallmark of her prodromal symptomology. We would have to take her to the specialty hospital for Toradol injections to stop the migraine cycle. So, when she started getting a migraine two weeks ago, I wondered if a naproxen-antihistamine cocktail would stop it. Naproxen targets prostaglandins (a chemical mediator produced by mast cells)–although NSAIDs are often contraindicated for people with mast cell problems– while the antihistamine (second-generation) targets certain histamines. Guess what? It worked. It stopped her migraine cycle.

I added a second-generation antihistamine to her medication regimen–an AM and PM dose. She has not had a migraine since, and her mood has improved. She is no longer experiencing cycling in her mood. Her focus is better. She is less irritable and agitated. Her daily flushing is gone. She is sleeping better. Her affect has improved, and persistent urticaria (hives) have healed as well.

MCAD is a new disorder. Few doctors are familiar with it. My rheumatologist admitted to knowing what it is but knowing next to nothing about it. She had little understanding and yet mast cells affect connective tissue and the immune system significantly.

Dr.Phil. What are the prevailing opinions regarding Dr. P? I have never watched his show, but I don’t live under a rock either. It’s hard not to be aware of his no nonsense, shoot from the hip, straight talk. Americans love gossip and drama, and they love reality television. It’s like red meat and red wine.

“And tonight we will be having a titillating show in which Tom is caught redhanded! We will pair that with high drama best exemplified by Martha’s throwing her drink in his face, and her ex-best friend will see this and tweet about it causing the entire bridge club of the White Haven Bridge Society to stop drinking their gin and tonics for five minutes !”

Dr. Phil has made his name and money on the backs of people’s pain and misfortune. They have agreed to it by appearing on his show and airing their dirty laundry in front of America. I suspect that people feel better about their lives by partaking of the hidden miseries of the lives of others. Dr. Phil has been more than happy to oblige them.

This latest show, however, has me asking questions, and I don’t know the answers.

Dr. Phil has interviewed actress Shelley Duvall most well-known for her roles in The Shining and Popeye. She has been out of the spotlight for almost 20 years, and this is the first time she has been seen. Duvall is mentally ill with what looks to be a psychotic disorder or dementia. To be honest, she speaks like and has the affect of someone with a schizophrenia spectrum disorder.

Dr. Phil is under heavy fire from certain people in Hollywood for this interview and receiving press attention, too. Is he doing this for ratings and, thusly, exploiting Duvall, or is he merely trying to help Duvall? I’m not sure.

Mental illness is no different than any other kind of illness in terms of the body experiencing disease. There are many contributing factors. In the case of a schizophrenia spectrum disorder, it is, like MS, a neurodegenerative disease. The illness itself is a manifestation of a brain-based, neurological disease.

Were people all up in arms when Michael J. Fox was being interviewed, his Parkinson’s Disease symptoms on full display? What about the countless documentaries on early-onset Alzheimer’s? How many interviews have been done with people experiencing dementia? Were people protesting then claiming exploitation and cruelty? No. What about news programs and documentaries featuring cancer patients in the throes of treatment manifesting symptoms of “chemo brain”? No one was tweeting that the directors were cruel and exploitative then.

So, what about this particular interview is pushing buttons? Duvall herself admits to needing help. She says, “I’m sick. I need help.” She also answers questions that clearly reveal positive symptoms elucidating some kind of underlying psychosis. It’s upsetting to watch. But what if psychosis weren’t stigmatized in our society?

What if psychosis were viewed as an indicator of a disease process in the brain, and everyone knew that. People would then see this interview and say, “Oh my. Ms. Duvall needs a medical intervention. I feel sad that she is ill now,” instead of reeling back in horror. You see, I don’t think that the root of people’s outrage over this interview is related to Dr. Phil’s tendency to ride the coattails of people’s misfortune. If everyone were authentically outraged over this, then more letters to the press would have been written sooner. Nothing that Dr. Phil is doing is new. He’s the same misery vampire as ever, and the American people have loved it. His show is still on the air. It’s in its 14th season.

I carefully submit that people are horrified by Ms. Duvall and the manifestation of her illness. It’s shocking. It is abnormal, and no one wants to see it. My question is this: How is mental illness to ever be normalized as part of the human experience unless people with negative, positive, and cognitive symptoms are introduced to people who are not acquainted with them? Mental illness is so stigmatized in our world. It is hidden and shamed. Few people outside of the reality of it want to talk about it in meaningful ways, and, when it is discussed and put out there bluntly, those with it are pitied or referred to as undignified. That is actually the perpetuation of stigma.

Americans are very comfortable with mockery and making that which is quotidian and quite normal profane. Disease in America is the norm. It has become normal, and mental illness is normal as well because it is a disease process; but most Americans distance themselves from it through objectification and mockery. How many Halloween costumes involve mocking those with mental illness–straight jackets, references to mental illness in the costumes themselves, and movie and comic book characters who are anti-heroes due to a mental illness e.g. The Suicide Squad. It is an hyberbolic surreality that proliferates due to distancing behaviors rooted in stigma and fear.

What Dr. Phil is doing, while distasteful, may not be a bad thing. The only thing that I might question is Ms. Duvall’s agency, and this is where dignity and potential exploitation come into play. When we lose our agency to a disease, our dignity becomes dependent upon our caregivers. Was Ms. Duvall acting on her own behalf, or was someone else acting on her behalf when the agreement was made to do this interview? Was her fundamental right to privacy violated by someone else acting as her power of attorney?

At the same time, do people ask these questions of other people manifesting diseases who participate in interviews? If not, then why? Why is there a double standard? Once again, I think that it may be due to the lack of societal normalization of mental illness perpetuated by stigma. Someone has to go first and show the world what it looks like–and not in a movie for the purpose of entertainment. Then, someone must go second, third, fourth, etc. The world must get comfortable with what it has always chosen to hide and avoid.

Why? 75% of Americans will, at some point, require help for mental illness of some kind. That would probably be a smaller number if 100% of Americans were willing to support them.

I’ve posted quite a few scholarly articles on mental health, in part, because it’s cool. I like to know what’s going on in the body and what current research is being done. I have two other reasons. Wouldn’t it be great to know why people aren’t feeling well mentally (etiology) and, hence, remove the stigma?

How much stigma is around dementia and early-onset Alzheimer’s? Behaviorally speaking, it looks a lot like a brain-based mental disorder. Why? Brain-based mental disorders and Alzheimer’s both involve the brain becoming “ill”. We don’t see adults on television shows saying things like, “Oh, that old person is so crazy! They got dementia! Let’s just lock ’em up in the Looney Bin for the Aged.” I’m not at all implying that ageism is not a problem in American society. The elderly are not treated with nearly as much respect as they deserve. What I am saying, however, is that certain brain-based diseases are widely accepted by the general public as legitimate illnesses requiring medical intervention. It’s even generally understood that those diseases affect other parts of the body, in large part, because the disease in question began in the brain.

So, if one were to see an older person engaging in odd behaviors in public, one doesn’t usually jump to conclusions and say things like, “That person must be high.” No. More often than not, members of the general public will say, “I wonder if that person has dementia. Do they need help?” Even if someone is relatively uneducated, the notion of dementia is so well-known that I’ve heard people say things like, “Oh, does that person have that thing that elderly people get where their brain starts to go? I hope I never get that. I don’t want to die like that.” There is a general awareness that a brain-based illness exists in the elderly population and that a brain-based illness can manifest as odd behaviors. The age of the person is what provides the context. Also, rarely are people afraid of the elderly so fear is not present to drive judgment.

For those of us in the know, we are fully aware that bipolar and schizophrenia spectrum disorders are biologically-based brain disorders. One can liken schizophrenia to Multiple Sclerosis in terms of how it originates in the brain and goes on to affect the entire person. There have been many theories suggested over the years as to the possible etiology of the disease. Personally, I’ve liked the theory around pruning because it was the only one that adequately explained the loss of white matter in the brain. When I tell people what happens to the brain of someone with schizophrenia, they are usually shocked. The loss of white matter and neural connections is what is causing most of the positive, negative, and cognitive symptoms. This is indeed a neurodegenerative disease. Once someone fully understands the disease process of schizophrenia, they usually feel less inclined to stigmatize people who carry that diagnosis much like they don’t stigmatize a person with MS or Parkinson’s disease.

Here is a new landmark study to help you in your efforts to educate yourself and others on the possible etiology of schizophrenia. Yes! That’s right. The etiology. In short, it’s a pruning problem.

“On the surface, the culprit behind schizophrenia sounds a bit odd. It’s a variant in the major histocompatibility complex (MHC)—a set of proteins that decorate the surface of your cells—that binds to foreign molecules and presents them to the immune system. But McCarroll’s new study, which looked at the DNA of nearly 29,000 individuals with schizophrenia and 36,000 without, showed that this particular MHC variant causes the expression of a gene known as C4 to go into overdrive.

And it so happens that C4 is present at neuronal synapses, the connections between neurons that transfer chemical and electrical signals in your brain. On a cellular level, too much C4 can reduce the number of synaptic connections, a process known as “synaptic pruning.” On a human-scale, this can lead to schizophrenia.”

There you have it. The more educated we are about the etiology behind mental illness, the more we can educate others, thusly, removing the stigma and bringing the general public up to speed. If other neurodegenerative diseases are acceptable and not stigmatized, then biologically-based brain disorders like schizophrenia and bipolar disorder should be found among them. It just takes education.

It’s no secret that there is a crisis in the healthcare system in America. This is old news. In fact, it’s not even news anymore. It’s starting to become just “the way it is”. Behavioral healthcare, as health insurance providers like to call it, is an even greater problem. What is behavioral healthcare? As one hospital staff member explained it to me, “If it doesn’t make you sick or require surgery, then it’s not really considered an illness by the hospital and we refuse to bill insurance for it.” This is where “behavioral health” comes in.

Behavioral health refers to biologically based mental health disorders and mental health in general. Any disorder that can be found in the DSM-5 falls under “behavioral health”. In my city, there is a Behavioral Health Emergency Room. If you or someone you know is experiencing suicidal ideation, then go to the Behavioral Health ER. When Grace stabbed herself with a fork, we took her there. If a person with a mood disorder were to suddenly begin rapid cycling, then they would go to the Behavioral Health ER. Anyone struggling with psychosis, mania, clinical depression not responding to treatment and in need of immediate care and the like would go to a Behavioral Health ER. These disorders are, in fact, all manifestations of neurological disorders that are treated under the psychiatric specialty rather than neurology. They are, however, still medical in nature and, therefore, require medical attention. Why is the opinion even in the medical community otherwise? Does it really matter?

When hospital staff so brazenly declare that mental health disorders are not medical in nature and, therefore, will not bill health insurance for them, they are perpetuating the stigma surrounding mental illness. Schizophrenia spectrum disorders are neurodegenerative and neurodevelopmental in nature. They are the definition of “medical”, and yet staff members in hospital billing departments still maintain a belief that this cluster of disorders represents something more like Dissociative Identity Disorder (DID) or just bad behavior brought on by a combination of stress and poor distress tolerance. What is the likelihood that a person experiencing psychosis will seek medical attention then if hospital staff are untrained and ignorant? What is the likelihood that hospital staff will show respect to patients struggling with psychosis, mania, or depressive symptoms if they believe that it’s “all in their head” and with some real effort these patients could simply heal themselves?

What perpetuates this stigma within the medical community itself? Let me give you an example from my own community. I’ve written a few posts on my ex-husband’s anxiety disorder. He has struggled most of his life with almost crippling anxiety. Persuading him to overcome his anxiety and see an internist just for a physical examination in which he could also inquire about anxiety treatment was a huge success. It took 16 years of convincing. When he asked for a list of psychiatrists from his internist, the clinic gave him a list of recommended psychiatrists all of whom were no longer taking patients due to either being retired or dead. This clinic had not bothered to keep their list of psychiatrists up to date! They certainly keep their other lists of recommended specialists up to date. Are they giving men and women lists of recommended oncologists who have died and/or retired? Doubtful. This is profoundly troubling since, on average, twice as many women die by suicide annually than they do from breast cancer. Three times as many men die by suicide annually than they do by prostate cancer. And, yet, we are surrounded by charities and reminders that breast cancer kills, and we should do something about it. I agree wholeheartedly. Men should get physical exams and take care of their bodies. But, a well-known clinic can’t be bothered to maintain a list of psychiatrists so that their patients can receive psychiatric care and follow-up? Why?

Another large and well-known mental healthcare service provider in my area sent out a letter two weeks ago stating that they would be discontinuing their psychiatric services. Period. There was no list of local treating psychiatrists who current patients could call in order to maintain their current level of care. Just a notice of “We’re closed for business. Good luck getting those meds filled.” This is shocking. Psychiatry is a medical speciality. Patients under the care of a psychiatrist are receiving specialized care, and it borders on unethical to suddenly stop care without transferring that care to another physician or, at a bare minimum, providing a list of physicians who are taking new patients. This attitude, however, is prevalent within the medical community itself, and this is what perpetuates the stigma within the medical community. If doctors, therapists, and administrators themselves believe that behavioral healthcare is simply optional and not vital to the health and well-being of their patients, then what does this say about the medical community’s view of mental health? A person receiving treatment for Multiple Sclerosis would not simply receive a letter from their neurologist stating, “I’ve decided to drop you as a patient. Good luck finding care elsewhere,” but patients with diagnosed mental health disorders are treated like this quite often by their own mental healthcare providers. Why?

I think that the medical community is caught between two views–the old and the new. Animal models are showing that most mental health disorders from depression and OCD to bipolar disorder and schizophrenia spectrum disorders are biologically based meaning caused by the enteric or primary nervous system. The research is consistently pointing to the gut or the brain. It is an exciting time to be a neuroscientist. Deficits in the function on a brain level often manifest behaviorally, however, and many people–even doctors–are very uncomfortable with unusual behaviors. It’s easy to blame trauma and shove someone out the door. Even trauma, however, becomes brain-based as the success of treatments like EMDR are showing.

We are socially conditioned to feel ashamed when we feel anything but happy and good about ourselves. If you don’t feel happy, then pull yourself up by your bootstraps! Exercise. Change your diet. Lose weight. Get a makeover. Go for a walk. This might work if you don’t have a biologically based mental disorder, but who, within the medical community, is willing to consider this? Furthermore, who is willing to consider that a child might have bipolar disorder or a schizophrenia spectrum disorder? What physician is willing to say that bipolar disorder, for example, is as serious as cancer and deserves the same amount of attention and care? The number one cause of premature death among those diagnosed with bipolar disorder is suicide with 15-17% taking their own life and up to 50% attempting suicide at least once due to the negative symptoms of the disorder. These are shocking statistics, and I don’t think most physicians consider this. Until the medical community at large is able to take mental health seriously–as seriously as it takes cancer and heart disease–there will be a lack of quality care and treatment for people struggling with mental health disorders. Perhaps then we’ll begin seeing sparkly new hospital wings dedicated to mental healthcare right next to the breast cancer and heart surgery wings.

A good friend recently recommended this book to me: I Thought It Was Just Me (but it isn’t) by Brené Brown. It was rocking her world. In fact, she was loving it so much that she was sending me quotes from the book throughout the day, and I was finding myself wanting to read more. Brown’s book is about shame and developing shame resilience. She is, in fact, one of only a handful of people who has dedicated her academic career to research around shame and its effect on the brain, body, relationships, gender, and communities at large. My interest was piqued to say the least. I bought the book.

I’m going to recommend it to all of you. And, in the spirit of that famous 1970s Faberge shampoo television commercial of old (but not that old), I’m going to suggest that you read it and then recommend it to your friends.

Shame is not a hot topic at cocktail parties although if someone brought up the topic next to me I would stay and chat. According to Brown, most people run from it and dislike discussing it. I am not one of those people. I want to talk about shame. What is shame? After years of listening to stories and doing research, this is Brown’s definition, and I think it’s a good one:

Shame is the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.

She describes shame ever so correctly as a “full-contact emotion” meaning that we feel shame both emotionally and viscerally. You know when you’ve been shamed. Whether you feel it in your stomach or your chest or feel yourself suddenly sinking into that familiar emotional prison where the guard says, “You deserved that,” shame punishes from the inside out and the outside in. It puts you in a double bind so that no matter what you do, you cannot win. Or, at least, that’s how it feels.

Shame is at the core of the stigma associated with mental illness. Brown’s definition of shame describes the existential experience of many people who have encountered stigma. There’s only a certain level of “crazy” that is socially acceptable around these parts. If anyone exceeds that? Well then, something must be wrong with them! Shun them and drive them out of town! Surprisingly, there are many ways to shun and alienate people who are viewed to be flawed and unworthy of acceptance and belonging. This is why stigma is so dangerous. One’s personal shame is often based in a perception that just might be false. We feel like we are flawed and therefore unworthy, but this feeling originates in us. Stigma originates outside of us and reinforces the feelings of shame that come from within. We, therefore, stop questioning the validity of our shame responses because parts of our community are validating our shame for us! The logical step is then to believe that our shame is true; we must be innately flawed and unworthy of acceptance and belonging. What’s next then? Action urges. People usually begin to act on their feelings reinforced by stigma if they do not have a stronger message coming into their lives from somewhere else. This is a not a healthy place to be.

Brown recounted a story about a young woman named Allison whose mother hanged herself. She was an adolescent at the time of her mother’s suicide. Allison recalled that her community rejected her. Everyone began to pull away from her and her grieving father. She lost her friends. She and her father were shunned as if her mother’s suicide was a virus that could be passed on. A big scarlet S was plastered to their chests–SUICIDE. The intensity of the shame that was poured out upon this young woman and her father was crippling. Eventually, her father died, and she reported feeling relieved because she never had to return to her hometown again. She never again had to be known as the girl whose mother hanged herself.

Reading this story didn’t exactly hit a nerve for me, but I felt it in a raw sort of way. I had two grandparents who died by suicide as you, my readers, know. My mother has struggled with depression for most of her life, and she has tried to commit suicide many times. There was an occasion when I was 14 in which she was almost successful. In a very dramatic fashion, she was removed from our home in full view of the Trinity, the Heavenly Host, the entire country club association, and Vera the neighborhood gossiping hen. I just stood there thinking, “How long will it take for the entire state of Texas to find out that my mother just tried to blow her head off?” Vera sidled up to me sweetly and cooed at me in her treacly voice, “Oh honey, I am so sorry! Now, tell me what happened exactly?” There it was. The phone calls started coming in within 24 hours. She moved fast. Veronica’s parents wouldn’t let me come over anymore. Kathy’s parents wouldn’t let her come to my house, and I couldn’t go there either. Kerri’s parents wouldn’t even let her call me. I spent that entire summer socially isolated and alone. In other words, I spent the summer at my stepfather’s mother’s house. She was Lithuanian, mean, and made me embroider doilies all….summer…long. This is one shade of stigma from an external point of view. The internalized experience might be something like this: “No one wants you around because of your mother.” This is a fairly accurate experience for many people who have mental illness in their family. This is one reason why many families keep mental illness a secret which only perpetuates and feeds shame. They don’t seek out much needed supports and interventions because they are legitimately fearful that they will lose their social support structures. I did.

A similar thing happened to us after Grace’s first psychotic episode. She lost most of her friends save one, and I lost friends, too–one in particular. She has still never called me and does not respond to any attempted contact. Apparently, schizophrenia spectrum disorders are catchy! The natural response to this is retaliation. There is a self-righteous anger that comes to the surface. We want to take out our metaphorical bats and go have “a talk” with the people who shamed and victimized vulnerable people. I want to share something very important that Brown notes:

“…if we are going to understand shame, we must not only seek to understand Allison’s experiences, but the reactions of those around her. We can’t simply “shift shame” from Allison to her “insensitive neighbors.” Shaming her neighbors and friends would be equally destructive. Second, we have to dig deep and be honest about how we might react as a neighbor or friend. If I came home from work and saw an ambulance and police cars surrounding a neighbor’s house, I’d immediately patch into the neighborhood phone tree to find out what happened. I might not walk over and stand around gawking, because I’d like to believe I’m above that— or at least I’d want my neighbors to think I’m above it. Instead, I’d call someone who had walked over, which is probably worse. Unless I was extremely aware of what I was doing and I was consciously working not to gossip, I would probably be equally guilty of talking about it, speculating why, wondering about the details and drawing false conclusions. I can just hear conversations where we’re saying things like “I knew something wasn’t right over there” or “You know, one day I saw her . . .” I might even make assumptions about the mental stability of Allison’s father or about Allison herself following such a traumatic event. I might become uncomfortable letting my daughter play at her house. In other words, I might become exactly what I hated and, at first, refused to understand. Why? Because I’m a terrible person like Allison’s teachers, neighbors and friends? No— it’s because I’m human and situations like that can throw us into our own fear, anxiety, grief and, sometimes, even into our own shame. And to alleviate those overwhelming feelings, we seek connection with others— sometimes in incredibly hurtful and destructive ways, like gossiping and excluding others. If we really want to get at the heart of the beast, we have to understand more than what it feels like to experience shame. We need to understand when and why we are the most likely to engage in shaming behaviors toward others, how we can develop our resilience to shame and how we can consciously make the effort not to shame others…Our level of resilience to shame is not dependent solely on our ability to recognize these behaviors and emotions in ourselves, but also on our ability to build connections with others. These connections require us to understand what we share in common when it comes to shame.”

And, there it is. People who are often on the other side of our shaming experiences are human beings, too, seeking out connection to alleviate their own painful internal responses. The way in which they go about it can often be very hurtful, but shame shifting is as destructive as applying stigma.

What is Brown really saying here? The only real cure for shame and stigma is empathy. Perspective-taking. And, it has to flow both ways. The real burner here is that someone has to show empathy first. Who do you suppose is going to do that? The neighborhood associations who storm city hall in order to prevent a day treatment program from being built near them? Likely not. Reactionary behavior like that is indicative of fear. We still live in an age where people believe that schizophrenia is dissociative identity disorder which, to me, is just laughable. Nonetheless, it’s true.

Clearly, I don’t have all the answers or even one great one. I do see, however, that shame shifting, responding in anger, and blaming behavior only perpetuate the cycle of stigma in our culture. I suspect that it will take a great deal of patient empathy and painstaking education over time as well as a willingness to listen to people air out their fears in order to begin to address and eventually lift the shadow of stigma associated with mental illness from our culture.

Anger is easy. Empathy, on the other hand, is not, but someone has to take the road less traveled if the culture is going to shift.

I’m back! Where was I? My precious laptop died. The hard drive failed. My Mac was sent off to the Genius Bar for an entire week. O the pain! My husband was very pragmatic about it:

“You’ll be fine. We have three iPads. Just use one of those, or use your phone. You’ve got a Smartphone.”

My response?

“…..”

I feel the need to defend our possession of three iPads. My husband works in the IT field. He was given all those iPads through occupational opportunities. “Show up at this event and get a free iPad!” He once went to a Microsoft roundtable discussion and walked out with a free laptop. I don’t understand how that world operates, but I do appreciate the swag. He was even given the MacBook Pro I now call mine.

Anyway, I am not 25. I cannot write blog posts from an iPad. I’m one of those old people who requires a keyboard. Even a tiny Bluetooth keyboard. Something!

It’s not a bad thing to go silent for a while. I was cut off from the Internet essentially, and I was more present because I didn’t have the distraction of my shiny laptop. So, what have I learned in the brief time that I was offline?

Milly is finally seeing a pediatric psychiatrist. When I step back and read this I shake my head. I have three children seeing psychiatrists. Good grief! Is that really necessary? Remember that neighbor down the street who was gossiping about my family with other neighbors? She yelled at me from her front steps and screamed “Munchausers!” When she emailed me later to justify her behavior, she told me that she knew that all my children were medicated; she didn’t agree with that. I must have “Munchausers” if I’m medicating all my children.

Her obvious ignorance regarding factitious disorders aside as well as the perpetuation of misinformation amongst the women down the block, there is a valid point hidden here. Is it good to medicate children? Grace is medicated. Eadaoin is medicated. Milly is medicated. Doireann is not.

I used to think like my neighbor. I refused to take medication myself. My mother took so many drugs. I didn’t want to be like that. I grew up around myriad pill bottles. My mother had Multiple Sclerosis, and she had a pill for everything that ailed her. In the early 80s, there weren’t a lot of treatment options. She also struggled with a major depressive disorder in addition to a personality disorder. I grew up around mental and physical illnesses. I wanted to walk a different path. I wanted to be my mother’s foil in every way. So, when I got my first migraine at 27 years-old, I didn’t want to take medication for it. Surely there was a better way to manage it.

I went to a homeopath. I went to a naturopath. I saw chiropractors. And, I suffered. Everyone had different opinions as to why I had migraines, and they were all adamant that they were right. I tried to do everything that everyone told me to do. I never improved. Eventually, I began to experience 20 migraines a month, and my OB practically dragged me to a neurologist. I needed medication and testing. I was terrified. I hated neurologists having been forced to see them when I was younger due to a seizure disorder. I wanted to be done. Thus began my journey into the weird world of the brain and better living through chemistry.

If epilepsy runs in your family, as it does in mine, you have almost double the risk for developing migraine with aura. Oh. Well, that sucks. Maybe I should have visited a neurologist sooner for my migraines. I have a seizure disorder. Migraine with aura in women causes white matter lesions which can permanently alter brain structure. Uh…that seems important. So, taking Excedrin for Migraine and sleeping it off isn’t a sound practice? We should not be doing that? Why? Those structural changes can put you at risk for stroke later in life. Add an autoimmune disease like SLE to the mix and the results can be even more serious. A migraine is not a headache. It’s a neurological event that requires the care of a neurologist. Not the dude at Walgreen’s stocking the analgesic aisle.

I’ve made my point, right? I was an idiot to wait so long to see a neurologist, but I was afraid. I was afraid because I’d been forced to see neurologists before, and they were all asshats. That’s right. All of ’em. Neurologists, in general, tend to treat patients like walking brains. They are known to have a terrible bedside manner largely because they are so smart. Neurology is a very hard speciality, and it draws the clinically-minded physician who should probably be in a lab dissecting brains rather than interfacing with humans with pulses. I wasn’t properly diagnosed with a seizure disorder for years because my seizures were idiopathic. A brilliant neurologist finally diagnosed me based upon posturing in my left hand. From that posturing she knew the type of seizures I had and predicted that my EEG would be “clean”. Up until that moment, I felt crazy, and I was weary of being examined and sent on my way with a clean bill of health even though I knew something was wrong.

But we keep trying. We are tenacious. We don’t give up just because we don’t like it or because we are scared or because it’s hard.

This is what it’s like with our kids and even ourselves when we talk about mental health. There are some horrible mental health care providers out there. Let’s just say it. There are! I’ve met some really bad therapists and psychiatrists. There’s a reason One Flew Over the Cuckoo’s Nest was written. I’ve met my share of Nurse Ratcheds and sadistic psychiatrists. Do we let them determine our progression in life or our choices? Do we abandon our path and camp out somewhere just because we’re afraid? Do I refuse to get help for my daughters because I’m afraid of what other people will think of me or even them? Do I cower or let my daughters shrink because a few women down the block gossip about us?

One day, medication may not be the right answer for Milly or Eadaoin, and I’m open to that. I am, however, out there in the world banging on doors. What is going to move them up the spectrum of functionality? Three weeks ago, Milly was crying every day, overwhelmed with fear and anxiety. Today, she isn’t. She’s able to try to take risks. She has moved up the spectrum of functionality. Can she self-regulate? Well, she tries. It took her an hour to calm down last night after a disappointment, but she did calm down eventually. She is able to talk about her feelings with more ease rather than hide under her desk in her room. On a very basic level, this is why we use medication in terms of treating mental health issues. We are attempting to augment a deficiency so that we become more functional in hopes that the side effect profile of said medication will not add to our deficiencies. While the drug is in use, we take advantage of therapy in order to learn new skills that will compensate for our natural deficiencies so that when we stop using the drug we will not feel our deficiencies as much as we did before. The drug is a buffer and a life preserver of sorts that allows us to learn to properly swim in whatever sort of sea characterizes our life. If our life is like choppy waters, then we must acquire the skills to swim in that. If our life is like that of a vast ocean, then we must acquire the skills to learn to swim in that. If we live on an island with few resources, then we have to learn to live there.

Why would we deprive our children, ourselves, or anyone else from acquiring functionality or judge someone for attempting to engage in this growth process? Why should we fear? My neighbor judged me harshly because she insisted that schizophrenia was really just caused by a food allergy. I was the stupid one for consulting a doctor. I had “Munchausers”. I should have been seeing a chiropractor who specialized in applied kinesiology. She is entitled to her opinion but not her judgments. None of us are. I don’t walk in your shoes, and you don’t walk in mine. I have no right to hold your decisions against you when I don’t even know how you arrived at the space in your life that you now occupy. I’m not privy to your deepest desires or the movements of your heart.

What I do know is that it’s far easier to judge someone than to love someone or even come alongside someone who is suffering. But, I think that goodness is the answer for what ails us. It will always trump judgment.

I was at a conference last year, and a speaker pondered:

“What if the problem today isn’t drugs or terrorism, unemployment or poverty but rather the lack of goodness in the world?”

It’s an interesting question, and you don’t have to agree with the conclusion. I, however, see more and more that cynicism, criticism, anger, and fear-mongering don’t bring lasting change in my life, the lives of my children, or even the world at large. Goodness? Kindness? Moving away from always trying to be right to attempting to understand? You may not see change right away, but, on a foundational level, it feels like a better way to move through life. It seems like a more appropriate response to life’s weightier circumstances. It seems like a way through when we’d really just like to go around and avoid altogether. Life, however, can’t be avoided, can it? We must all stand and be counted at some point. And, if we have vulnerable people depending on us to care and advocate for them, then our reasons for standing up become that much more significant. Defining ‘goodness’ isn’t easy, is it?

Take my laptop away for a week and this is what happens. Ontology strikes again.

1 in 100 people on average have or will develop schizophrenia. When I heard that statistic, I was shocked. I didn’t realize it was so common. Okay, so it’s only 1% of the population? Still. Go to a Lady Gaga concert. Now do the math. In my opinion, that’s too many people walking around in one venue with such a burdensome illness. The good news is that researchers are trying to figure out schizophrenia’s etiology and pathogenesis so that they can do something about it. That’s great news for the next few generations. It’s tough for people in the now who are so intimately acquainted with this disease.

The latest research has given us a few theories. One of these theories is the cytokine theory. If you have RA, then you’ll know what cytokines are. They are proteins, and they do many, many things in the body, but for the sake of this discussion I am going to discuss them in the context of the immune system. One thing that they are associated with is inflammation:

The pathogenesis of schizophrenia has yet to be fully characterized. Gene–environment interactions have been found to play a crucial role in the vulnerability to this disease. Among various environmental factors, inflammatory immune processes have been most clearly implicated in the etiology and pathology of schizophrenia. Cytokines, regulators of immune/ inflammatory reactions and brain development, emerge as part of a common pathway of genetic and environmental components of schizophrenia. Mater- nal infection, obstetric complications, neonatal hypoxia and brain injury all recruit cytokines to mediate inflammatory processes. Abnormal expres- sion levels of specific cytokines such as epidermal growth factor, interleukins (IL) and neuregulin-1 are found both in the brain and peripheral blood of patients with schizophrenia. Accordingly, cytokines have been proposed to transmit peripheral immune/ inflammatory signals to immature brain tissue through the developing blood–brain barrier, perturb- ing structural and phenotypic development of the brain. This cytokine hypothesis of schizophrenia is also supported by modeling experiments in animals. Animals treated with specific cytokines of epidermal growth factor, IL-1, IL-6, and neuregulin-1 as embryos or neonates exhibit schizophrenia-like behavioral abnormalities after puberty, some of which are ame- liorated by treatment with antipsychotics. In this review, we discuss the neurobiological mechanisms underlying schizophrenia and novel antipsychotic candidates based on the cytokine hypothesis. (online source)

This implies that schizophrenia is neurodevelopmental meaning that the disease’s etiology actually begins prenatally. The next question is: Does pro-inflammatory action continue postnatally and into and past the prodrome of the disease?

A January 2014 study published in Psychiatry Weekly suggests the affirmative:

Activation of inflammatory pathways is one among many hypotheses exploring the pathophysiology of schizophrenia. A number of studies suggest that prostaglandin E2 (PGE2), C-reactive protein, and proinflammatory cytokines are all increased in schizophrenia patients. Furthermore, schizophrenia patients who respond to treatment have shown lower inflammatory markers compared to treatment outset. The same is also seen in major depressive disorder, bipolar disorder, and regarding oxidative stress markers. “One may be led to believe that vulnerability to mental illness may somehow be related to neuroinflammation,” says Dr. Christoph Correll, “and therefore the question becomes: could symptoms be reduced by reducing inflammation?” (Psychiatry Weekly)

So, what do we do with this information? And, what about this mention of major depressive disorder and bipolar disorder? Neuroinflammation is possibly present there as well?

Turmeric (rich in curcuminoids) and ginger (rich in gingerols and shogaols) rhizomes have been widely used as dietary spices and to treat different diseases in Ayurveda/Chinese medicine since antiquity. Here, we compared the anti-inflammatory/anti-oxidant activity of these two plants in rat adjuvant-induced arthritis (AIA). Both plants (at dose 200 mg/kg body weight) significantly suppressed (but with different degrees) the incidence and severity of arthritis by increasing/decreasing the production of anti-inflammatory/pro-inflammatory cytokines, respectively, and activating the anti-oxidant defence system. The anti-arthritic activity of turmeric exceeded that of ginger and indomethacin (a non-steroidal anti-inflammatory drug), especially when the treatment started from the day of arthritis induction. The percentage of disease recovery was 4.6-8.3% and 10.2% more in turmeric compared with ginger and indomethacin (P < 0.05), respectively. The present study proves the anti-inflammatory/anti-oxidant activity of turmeric over ginger and indomethacin, which may have beneficial effects against rheumatoid arthritis onset/progression as shown in AIA rat model.

Here’s the thing about animal studies. If you want to know what’s going to be happening in medicine and pharmacology ten to twenty years from now, then you have to look at present animal studies. That’s where the cutting edge of medicine is because this is where researchers are asking the questions about modern diseases. What is the one thing that scientists keep running into when they talk about disease onset and progression? Inflammation. It is a marker for disease. Inflammation in the body is the immune system at work, and it’s been in the news for the last decade.

What is the important takeaway from one animal study about arthritis? Turmeric was more potent than indomethacin (NSAID) in treating rheumatoid arthritis onset and progression in animal models. Turmeric! A spice! This means that turmeric interacts with the body’s cytokines, and this is really important. My next question is: Does turmeric cross the blood/brain barrier?

Turmeric has been in use since ancient times as a condiment and due to its medicinal properties. Curcumin, the yellow colouring principle in turmeric, is polyphenolic and major active constituent. Besides anti-inflammatory, thrombolytic and anticarcinogenic activities, curcumin also possesses strong antioxidant property. In view of the novel combination of properties, neuroprotective efficacy of curcumin was studied in rat middle cerebral artery occlusion (MCAO) model. Rats were subjected to 2 h of focal ischemia followed by 72 h of reperfusion. They were pre-treated with curcumin (100 mg/kg, po) for 5 days prior to MCAO and for another 3 days after MCAO. The parameters studied were behavioural, biochemical and histological. Treatment with curcumin could significantly improve neurobehavioral performance compared to untreated ischemic rats as judged by its effect on rota-rod performance and grid walking. A significant inhibition in lipid peroxidation and an increase in superoxide dismutase (SOD) activity in corpus striatum and cerebral cortex was observed following treatment with curcumin in MCAO rats as compared to MCAO group. Intracellular calcium levels were decreased following treatment with curcumin in MCAO rats. Histologically, a reduction in the infarct area from 33% to 24% was observed in MCAO rats treated with curcumin. The study demonstrates the protective efficacy of curcumin in rat MCAO model. (Anti-ischemic effect of Curcumin on Rat Brain)

This study was addressing strokes; however, it proves one thing. Turmeric crosses the blood/brain barrier and acts as a neuroprotective agent. If that’s not enough, here’s one more article discussing turmeric’s action in the brain regarding Alzheimer’s Disease:

This paper discusses the effects of curcumin on patients with Alzheimer’s disease (AD). Curcumin (Turmeric), an ancient Indian herb used in curry powder, has been extensively studied in modern medicine and Indian systems of medicine for the treatment of various medical conditions, including cystic fibrosis, haemorrhoids, gastric ulcer, colon cancer, breast cancer, atherosclerosis, liver diseases and arthritis. It has been used in various types of treatments for dementia and traumatic brain injury. Curcumin also has a potential role in the prevention and treatment of AD. Curcumin as an antioxidant, anti-inflammatory and lipophilic action improves the cognitive functions in patients with AD. A growing body of evidence indicates that oxidative stress, free radicals, beta amyloid, cerebral deregulation caused by bio-metal toxicity and abnormal inflammatory reactions contribute to the key event in Alzheimer’s disease pathology. Due to various effects of curcumin, such as decreased Beta-amyloid plaques, delayed degradation of neurons, metal-chelation, anti-inflammatory, antioxidant and decreased microglia formation, the overall memory in patients with AD has improved. This paper reviews the various mechanisms of actions of curcumin in AD and pathology. (The effects of curcumin (turmeric) on Alzheimer’s Disease: An overview)

If the cytokine theory or even the microglial theory is true and the etiology of schizophrenia is related to or even partially related to an immune response, then turmeric fits the bill as an adjunct treatment. It has a very low side-effect profile particularly when you compare it to lithium and antipsychotics. Turmeric is also a broad spectrum anti-viral. I have been taking it for two years, and I rarely get sick. I also rarely need to take ibuprofen since taking turmeric faithfully. It truly is as effective as an NSAID, when taken daily, for managing chronic pain.